Minutes of the Interagency Autism Coordinating Committee (IACC) Meeting on December 14, 2010
The Interagency Autism Coordinating Committee (IACC, also referred to as "the committee") convened a meeting on Tuesday, December 14, 2010 from 10:00 a.m. to 5:00 p.m. at the Bethesda Marriott at Pooks Hill in Bethesda, Maryland.
In accordance with Public Law 92-463, the meeting was open to the public. Thomas R. Insel, M.D., Director, National Institute of Mental Health, chaired the meeting.
Participants: Thomas Insel, M.D., Chair, National Institute of Mental Health (NIMH); Della Hann, Ph.D., Executive Secretary, Office of Autism Research Coordination (OARC), NIMH; Susan Daniels, Ph.D., Office of Autism Research Coordination (OARC), NIMH; James Battey, M.D., Ph.D., National Institute on Deafness and Other Communication Disorders (NIDCD); Ellen Blackwell, M.S.W., Centers for Medicare & Medicaid Services (CMS); Coleen Boyle, Ph.D., Centers for Disease Control and Prevention (CDC); Josephine Briggs, M.D., (representing Francis Collins, M.D., Ph.D.), Henry Claypool, HHS Office on Disability*; Judith Cooper, Ph.D., National Institute on Deafness and Other Communication Disorders (representing James Battey, M.D., Ph.D.); Geraldine Dawson, Ph.D., Autism Speaks; Gerald Fischbach, M.D., Simons Foundation; Lee Grossman, Autism Society*; Alan Guttmacher, M.D., Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD); Gail Houle, Ph.D., U.S. Department of Education (ED); Walter J. Koroshetz, M.D., National Institute of Neurological Disorders and Stroke (NINDS); Cindy Lawler, Ph.D., National Institute of Environmental Health Sciences (representing Linda Birnbaum, Ph.D.); Sharon Lewis, Administration for Children and Families (ACF); Christine McKee, J.D.; Ari Ne'eman, Autistic Self Advocacy Network (ASAN); Lyn Redwood, R.N., M.S.N., Coalition for SafeMinds; Denise Resnik, Southwest Autism Research & Resource Center*; Stephen Shore, Ed.D., Autism Spectrum Consulting; Alison Tepper Singer, M.B.A., Autism Science Foundation; Marjorie Solomon, Ph.D., M.B.A., University of California, Davis and M.I.N.D. Institute; Peter van Dyck, M.D., M.P.H., Health Resources and Services Administration (HRSA).
*Note: Attended by phone.
Call to Order and Opening Remarks
Dr. Insel welcomed the meeting attendees to the December meeting of the Interagency Autism Coordinating Committee and the members introduced themselves. He then outlined the events of the day which included completing the update to the annual IACC Strategic Plan for ASD research and hearing updates on the activities of the Services Subcommittee and the newly formed Subcommittee on Safety.
Dr. Insel presented a brief overview of the latest scientific breakthroughs and notable events in the previous seven weeks. He reported to the committee that autism research had been highlighted as an important emerging area at the annual Society for Neuroscience conference held in San Diego and that the conference had opened with a widely-attended symposium on the subject, chaired by Dr. Gerald Fischbach.1 In recent scientific advances, researchers were able to identify people with ASD from controls with a high degree of sensitivity and specificity using brain scans measuring structural differences in the cortex of the brain.2 This suggests that such structural differences could serve as a potential biomarker for ASD. In other research, a study of postmortem brain tissue found connectivity abnormalities visible at the microscopic level in the cortex.3 A functional imaging study of people with ASD, their unaffected siblings, and typically developing controls identified regions of the brain that are activated by biological motion in both children with ASD and their unaffected sibling.4 Interestingly, the researchers also noted regions of hyperactivity in the unaffected brother or sister, part of what they termed the "compensatory network," which may explain why the sibling did not develop ASD. A study of the known autism risk gene CNTNAP2 (contactin-associated protein 2) found that those with the gene had fewer long distance brain connections to the parietal lobe and more local connections within the region than the general population.5 Dr. Insel noted that brain imaging can now be used to consider how structural and connectivity differences relate to known genetic risk factors. He then reviewed the results of a highly publicized study investigating changes in mitochondrial function associated with ASD.6 He noted that there was much interest in the subject matter and that the small study would have to be replicated. He quickly mentioned a study authored by Dr. Isaac Pessah and Dr. Irva Hertz-Picciotto,7 recommending that the committee members read the research coming out of the CHARGE (Childhood Autism Risks from Genetics and the Environment) network, and referenced a large epidemiologic study conducted in Sweden that indicated children with ASD were 50 percent more likely to have a family history of autoimmune disorders.8 Finally, Dr. Insel described how fibroblasts were converted into induced pluripotent stem cells (iPSCs) to mimic neurons in Rett syndrome, a condition similar to ASD that results from a mutation in the MECP2 gene.9 In what the media deemed a "disease in a dish," the neurons that were created closely mimicked the abnormal characteristics associated with Rett syndrome. The researchers were then able to test therapeutics that successfully restored function to the neurons. This technique may represent a new way to understand the fundamental biology of a disorder and test therapeutics, Dr. Insel said. He ended by noting the depth and diversity of advances in ASD research that had occurred in just the previous few weeks.
Review and Approval of October 22, 2010 Minutes
The committee then voted to approve the minutes from the October 22, 2010 meeting of the IACC. Dr. Insel announced that the Executive Secretary of the committee and Acting Director of OARC, Dr. Della Hann, had accepted the position as Deputy Director of the NIH Office of Extramural Research and would be stepping down once the IACC Strategic Plan was finalized in January. He commended her for her extraordinary dedication and leadership. He announced that Dr. Susan Daniels will serve as Executive Secretary for the committee and Acting Director of OARC while a search for a permanent Director of OARC is conducted.
Strategic Plan Update – Discussion and Votes
Dr. Insel briefly reviewed the updating process for the 2011 Plan which included reviewing the draft 2009 IACC Portfolio Analysis of ASD Research to identify gaps and areas of opportunity and reviewing public comments received throughout the year and formally collected during Requests for Information (RFIs). The Planning Subcommittee also considered changes to public policy that might influence the 2011 update. Using these sources of information, the subcommittee developed a template to generate an addendum to each chapter. This addendum would address what has been learned in the past year, what gap areas have emerged, and how this information should impact the research objectives included in each chapter.
The Planning Subcommittee met six times in 2010, starting in April, to prepare updates to the Plan. They grappled with the scope of the revisions to the Plan, ultimately deciding that the additional perspectives brought by new members of the committee and the major healthcare legislation passed during the year warranted significant updates. There were areas in which the subcommittee could not reach agreement and would subsequently be brought for discussion in front of the full committee. These included issues related to the balance of biomedical versus services research and the extent to which "co-occurring conditions" may in fact be inherent to certain subtypes of ASD. The subcommittee also decided to place additional emphasis on community-based participatory research (CBPR) and comparative effectiveness (CER) research because of the prioritization given to these research models in the Affordable Care Act.
Dr. Insel reminded the committee that the Strategic Plan is intended to provide guidance to both public and private funders but that the IACC itself has no research budget. The Plan had significant influence in 2009 when its release coincided with the American Recovery and Reinvestment Act (ARRA). This allowed NIH to issue a Request for Applications (RFA) on the heterogeneity of ASD, ultimately awarding more than $60 million in grant funding. Unfortunately, the extent of Federal support for biomedical research in FY 2011 and FY 2012 is unknown in the face of the current fiscal constraints, and possible budget cuts could potentially reduce funding by 5 percent, he said. Due to position in the funding cycle, a decrease of this magnitude would potentially mean a 30 percent reduction in the number of new grants supported in FY 2011. Dr. Insel provided this scenario while asking the committee to be realistic about the extent of new research objectives added during the update.
Dr. Fischbach echoed Dr. Insel's comments about the uncertain fiscal climate and Dr. Koroshetz noted that the new Patient-Centered Outcome Research Institute (PCORI), created under the Affordable Care Act, may be an additional source of funding for comparative effectiveness research outlined in the Plan. Dr. Insel explained that PCORI will consist of a 21-member board overseeing the distribution of funding for CER. The committee then began reviewing the recommended updates to the Strategic Plan.
Review and Discussion of Question 1: "When Should I Be Concerned?"
After the committee reviewed the addendum to Question 1 "When Should I Be Concerned?" Ms. Ellen Blackwell asked that "people" be substituted for the term "patients" in two places. The committee agreed to table discussion of the ethical, legal, and social implications of chromosomal microarray genetic testing until Dr. Alan Guttmacher, an expert in the field, arrived. Dr. Coleen Boyle, who led the development of the addendum, provided an overview of the revisions to three existing objectives and the addition of two new objectives. The new objectives called for research determining the clinical utility of chromosomal microarray genetic testing and the ethical, legal, and social implications of its use. Dr. Della Hann summarized the proposed updates to the addendum, which included changing the target date of the first objective to 2012. The committee then voted unanimously to accept the proposed updates.
Review and Discussion of Question 2: "How Can I Understand What Is Happening?"
Dr. Marjorie Solomon, who led the workgroup updating Question 2, reviewed the addendum and suggested including recent studies by Dr. Christine Ecker10 and Dr. Ashley Scott-van Zeeland11 to the section on new research advances. She also suggested that the IACC devise a way to catalogue research in the annual portfolio analysis that could not be coded to any objective in order to better track future progress. The members updating Question 2 recommended revising the first research opportunity to include multidisciplinary assessments of metabolomics and broadening another research opportunity on language regression to include all forms of regression. The committee felt that a suggested research opportunity on metabolic pathway perturbations was sufficiently covered by the existing language and was deleted. The suggested updates also included adding the concept of wandering to an objective calling for research on the underlying biological mechanisms of co-occurring conditions such as epilepsy and sleep disorders (Question 2, Short-Term Objective E). Dr. Insel questioned whether wandering could be considered a co-occurring condition and Ms. Blackwell noted that Question 5 mentioned wandering issues as well. Ms. Alison Singer, co-chair of the Subcommittee on Safety, said that the members developed the objective to explore the biological underpinnings of wandering behavior. The committee discussed whether there was any evidence that would suggest that wandering behavior had an underlying biological cause and should be categorized with known co-occurring disorders such as epilepsy and sleep disorders. While many members agreed that there was little if any evidence to support the idea, Dr. Geri Dawson noted that dementia-related wandering was a recognized medical condition stemming from a biological change. She said that this could justify studies of impulse control and executive management as it relates to ASD-related wandering behavior. The committee then discussed the proposal to add fever to an objective calling for research into metabolic and/or immune mechanisms underlying the development of ASD (Question 2, Short-Term Objective A). Ms. Lyn Redwood noted that studies suggest that some children with ASD experience a lessening of symptoms during periods of fever, while others regress. The committee agreed to move a passage on new investigators to Question 7 because it related to developing the research workforce. The committee also agreed that the Office of Autism Research Coordination (OARC) staff should work with the language to make the style consistent throughout the Plan.
The committee discussed whether dates that have already passed should be modified in the objectives and agreed that it would decrease the sense of urgency. Dr. Dawson suggested maintaining the original target dates but noting when the objective had been modified. Dr. Hann summarized the recommended updates to the addendum and all passed. The vote to add wandering to the list of co-occurring conditions of interest in Short-Term Objective E passed by a margin of 10 to 6. All other recommendations passed unanimously.
Review and Discussion of Question 3: What Caused This to Happen and Can It Be Prevented?
Dr. Dawson, who led the development of the addendum to Question 3, reviewed the suggested updates. The gaps cited included the need for suitable model systems, additional epidemiological studies, collaboration between research on genetic risk factors and environmental exposures, and the lack of postmortem brain tissue. She proposed six new research objectives relating to studies of special populations, workshops to explore the usefulness of bioinformatic approaches, studies of the microbiome and epigenetics, and work to facilitate the development of vertebrate and invertebrate model systems. Ms. Blackwell noted that the number of studies needed to be indicated and Dr. Jim Battey advocated removing the numbers entirely, as they seemed somewhat arbitrary. Dr. Hann explained that the number of studies was necessary to calculate the recommended budget as was Congressional mandated. Dr. Dawson recommended conducting two studies on the microbiome in order to have replication and three studies of epigenetics because of the richness of the subject matter.
Mr. Ne'eman stated his objections to the chapter title and proposed removing "and can it be prevented" to create a more neutral tone. The committee later voted to reject this proposal by a margin of 11 to 4. The first research objective was revised to drop the mention solely of epidemiological studies and the phrase "take advantage of" special populations was eliminated. The committee set a target date of 2011 for the bioinformatics workshop and specified that two studies and one workshop would be dedicated to model systems development. Dr. Hann reviewed the revisions and they were accepted unanimously.
Review and Discussion of Question 4: "What Treatments and Interventions Will Help?"
The committee reviewed the addendum for Question 4, which included three new objectives related to research on the effectiveness of interventions in the community, developing and evaluating interventions for non-verbal individuals with ASD, and conducting research on health promotion and prevention of secondary conditions such as obesity and injury. The committee suggested including a reference to the NICHD conference on disparities in diagnosis12 and Mr. Ne'eman recommended revising the summary of findings evaluating the Lovaas model of Applied Behavior Analysis (ABA) to qualify that the effects on cognitive development were "potentially" positive.13 Ms. Blackwell noted that the new objective assessing interventions used in the community overlapped with an existing objective already in the Plan and Dr. Dawson noted that her intention was to target widely-used interventions with little evidence base. The committee agreed to move a statement about assessing potential harm to the first objective. Dr. Houle recommended revising the objective on interventions for non-verbal individuals to include measuring the impact of Alternative and Augmentative Communication (ACC) on quality of life. She also asked that a reference to "school-aged" children be amended simply to children. The committee discussed the distinctions between interventions and services and Ms. Blackwell said that she had touched upon this topic in Question 5. A target date of 2012 was specified for both the objective on non-verbal individuals and health promotion studies. Dr. Hann reviewed the suggested edits, which were unanimously accepted.
Ms. Idil Abdull thanked members of the committee for their help facilitating research on the prevalence of ASD in Somali communities within Minnesota and stated that her topic that day related to autism resources and services. She questioned how resources could be effectively allocated without an accurate assessment of prevalence and asked that the Autism and Developmental Disabilities (ADDM) Network be expanded to include sites in at least half of the United States. She recommended that more public universities conduct ASD research and demanded that Medicaid reimburse at rates similar to private insurance. She said that Medicaid should also be mandated to accept individuals with pre-existing conditions and voiced her concern that people more severely affected by ASD did not have the same availability of services as those with higher functional ability. She finished by urging parents to continue to be the greatest advocates for their children.
Ms. JaLynn Prince, founder of the Madison House Foundation, spoke about planning for the future needs of people with ASD. She reminded the committee that the number of school-aged children with ASD in the United States would fill seven of the largest sports stadiums. These children will become adults and will need adequate housing options, she stated. In addition, there will be a need for trained direct care staff and medical professionals, continuing education for people on the spectrum, and attention to safety considerations. First responders will need to be trained to appropriately interact with people on the spectrum. She asked the committee to look ahead and prepare for the future needs of a large number of people with ASD across their lifetime.
Review and Discussion of Question 5 "Where Can I Turn for Services?"
Ms. Blackwell reviewed the addendum to Question 5 and noted that major advances in the past year related to new health legislation such as the Affordable Care Act and the Mental Health Parity and Addiction Equity Act. She noted continued difficulties accessing quality and affordable health care for people was ASD as a gap area, offering reports by the Government Accountability Office (GAO) and the Kaiser Commission on Medicaid and the Uninsured as references.14, 15 She noted that many state Medicaid programs had recently eliminated adult oral health services under stress from continuing budget cuts.
Mr. Ne'eman suggested including an objective calling for studies to evaluate effective service models for people who do not meet institutional levels of care. Ms. Blackwell noted that this might be more suitable for a demonstration project and could only take place after states adopted such a Medicaid option. After further discussion, the committee agreed that this issue was sufficiently covered in the language already.
The committee then discussed the objective proposed by the Subcommittee on Safety which called for the "development and testing of two strategies or programs to increase health and safety of people with ASD that consider principles of self-determination and autonomy." Ms. Singer explained that the rationale for the objective came from a Swedish study showing that death rates were significantly higher among people with ASD than in the general population.16 The top causes of death were attributed to accidents and epilepsy. Ms. Sharon Lewis noted that the objective was written broadly enough to allow research in a number of areas related to health and safety. The committee then discussed why the objective had made reference to principles of self-determination and autonomy. Mr. Ne'eman voiced his concern that some interventions intended to protect people with ASD may actually infringe on their civil rights and the limit their personal freedoms. Dr. Josie Briggs noted that similar considerations arise in relation to elder care. The committee discussed the lack of evidence about safety risks and mortality in people with ASD and Ms. Lewis noted that they must first identify the most pressing wellness concerns before they could recommend strategies. In response, Ms. Singer recommended splitting the objective into two parts – a short-term objective calling for research identifying safety issues and a long-term objective to develop evidence-based interventions. Mr. Lee Grossman and Ms. Redwood felt that this solution did not address the urgency of safety issues being faced daily. After further discussion, the committee agreed to include two objectives on safety. The first would call for two studies to examine health, safety, and mortality issues for people with ASD by 2012. The second, long-term objective would call for the evaluation of at least two strategies or programs to increase the health and safety of people with ASD that simultaneously consider principles of self-determination and autonomy, by 2015. The committee also agreed that it would be important to note that the mortality rate was 5.6 times higher than average in the Swedish study.
The committee voted 10 to 8 to increase the number of studies evaluating policy and practice-level coordination among state and local agencies (Question 5, Short-Term Objective C) from two to five, include mention of AAC technology in the objective, and include support of at least one study on coordination between state and local mental health agencies serving people was ASD (both approved unanimously).
The committee also voted to develop a long-term objective on dental care that included a study of the cost-benefit of providing dental care, at least one study focusing on dental care provision to people with ASD, and studies evaluating training programs teaching dental care professionals to provide services for people on the spectrum. They then reviewed the addendum to Question 6.
Review and Discussion of Question 6 "What Does the Future Hold, Particularly For Adults?"
Ms. Blackwell had also been the lead in preparing the addendum for Question 6. She reviewed what had occurred in the past year and noted that the Centers for Medicare & Medicaid (CMS) had partnered to expand the Aging and Disability Research Centers. CMS had also released an environmental scan evaluating interventions for people with ASD.17 Of those intended for adults, only a third ranked as "evidence-based." She then reviewed new research findings related to transitioning into adulthood and losing services provided through school,18 research indicating under-diagnosis in Icelandic adults,19 and studies of ongoing deficits into adulthood related to independence and quality of life.20, 21 Ms. Lewis recommended striking a sentence about how people with ASD may need more assistance and oversight than those with other developmental disabilities. The committee also agreed to start the chapter with a statement about the continuing lack of research on youth and adults diagnosed with ASD. Ms. Blackwell said that she would provide references for the statement forecasting minimal improvement for state budgets in 2011. She also included the recommendation to use models such as Participatory Action Research (PAR) and Community-Based Participatory Research (CBPR). She recommended revisions to an objective on comparative effectiveness research of community-based interventions and services (Question 6, Long-Term Objective C) to include community housing and research on successful life transitions. A research opportunity was modified to include PAR and CBPR. Mr. Ne'eman noted that most of the life transitions specifically mentioned in the objective related to transitioning out of high school and that services for older adults seemed to warrant a separate objective. Dr. Dawson noted that she had received the report from a recent meeting on aging and autism and that she would provide language for the chapter. The committee agreed to separate older adults into a third sub-bullet of Long-Term Objective C. Dr. Hann reviewed the proposed edits and they were accepted by the committee.
Review and Discussion of Question 7 "What Other Infrastructure and Surveillance Needs Must Be Met?"
As the lead for revisions to Question 7, Dr. Boyle reviewed the recommendations with the committee. In new advances in data sharing, the addendum highlighted the Autism Informatics Consortium and the National Database for Autism Research. A number of biobanks were highlighted including those in the Autism Treatment Network, Simons Simplex Complex, Autism Genome Project, Autism Genetic Resource Exchange, NIMH Genetics Repository, and the NICHD brain and tissue bank. In surveillance, the workgroup who had developed the addendum highlighted the progress made by the ADDM Network and the National Survey on Children's Health. The section on information and communication dissemination focused on recent reviews of intervention quality and several state task forces and councils for ASD. The research workforce development section made note of the NIH training and fellowship grants and the Director's Pathfinder Award to promote diversity in the scientific workforce. Ms. Singer recommended adding language about concerns that gains in the research workforce will be lost once ARRA funding is exhausted. Dr. Insel noted that the Director's Pathfinder Award was not specific to ASD and recommended removing the passage. He suggested that concerns about the cliff after ARRA funding ends would be more relevant to gap areas. Mr. Ne'eman recommended emphasizing the need to add people with ASD to the research workforce.
Dr. Boyle then reviewed the gap areas, which focused on the need for increasing the utility and harmonization of major autism research informatics resources, the need to stratify people by clinically meaningful subgroups, and the need to maintain sites in the ADDM surveillance network. They also noted the need for better translation of research into practice and an ongoing investment in developing the autism research workforce.
Dr. Lawler commented that the need for "high-throughput screening tools to evaluate gene-environment interactions" did not seem to fit in the section on advances in biobanking and suggested specifying the use of induced pluripotent stem cells (iPSC) in parentheses. Dr. Hann reviewed the proposed changes and they were accepted unanimously with one abstaining.
The committee then reviewed the proposed changes to existing objectives and the addition of new objectives. The target date for the "State of the States" assessment (Objective B) had previously been revised to 2011 and the objective on establishing and maintaining a network of biobanks (Objective D) had been revised to include newborn bloodspots and support for a web-based digital brain atlas. Dr. Koroshetz recommended changing the language of the first new objective to specify "enhancing" rather than "establishing" networks of clinical research sites offering clinical care in real-world settings. The second new objective called for creating an information resource for ASD researchers to facilitate data sharing and method standardization. Another new objective included resources to develop promising model systems. An objective calling for the creation of a web portal to access recent information on interventions, services, and supports was transferred to the advances section because the Administration on Developmental Disabilities (ADD) was already in process of creating such a portal. Similarly, an objective calling for a meeting to establish standards for data collection on phenotyping and imaging protocols had already been convened so it was subsequently removed. Mr. Ne'eman requested that language in an existing objective on surveillance of younger and older age groups (Objective L) be revised to specify children and adults. The committee then voted to accept these recommendations.
Update: Report on the Somali Community Autism Issue
Dr. Boyle announced that CDC, NIH and Autism Speaks had come to an agreement to collaborate to formally investigate the prevalence of ASD in Somali immigrants living in Minneapolis, Minnesota. Their collaboration had been prompted by public comment on the matter from Ms. Abdull during the October 22, 2010 meeting. CDC, NIH, and Autism Speaks will each contribute money to the study, which she noted would use similar methodology to research conducted in Brick Township, NJ in 1998, including a review of records and an independent confirmation of ASD after in-person examination. Dr. Boyle said that they had been in contact with the Minnesota Department of Health and that they were pleased with the potential support. She noted that there could be potential issues with contributing Federal funds because a formal appropriations bill had not yet been signed into law but that Autism Speaks could put in initial funding before Federal funding was added.
Dr. Cindy Lawler reported that NIH had committed a total of $150,000 to the effort from four Institutes (NICHD, NIMH, NIEHS, and the National Institute on Minority Health and Health Disparities). NIH and CDC had begun drafting an interagency agreement that would allow them to transfer funds. She noted that the study embodied many of the tenets of the Strategic Plan and represented effective cooperation between different stakeholders.
Dr. Dawson noted that Autism Speaks has committed $100,000 to the study and that they were happy to be collaborating with NIH and CDC. Dr. Insel recommended contacting Dr. Chris Gillberg who was currently studying the Somali population and Sweden. Ms. Abdull thanked the committee profusely for their efforts.
Update: IACC Subcommittee on Safety
Ms. Singer, co-chair of the Subcommittee on Safety, reported that the group had met for the first time on November 29th in order to draft a letter to Secretary Sebelius on the issue of ASD-related wandering. She noted that the letter starts out recounting the death of Mason Medlam as a result of ASD-related wandering, shared by Ms. Sheila Medlam at the October 22nd meeting. The letter also lists the names of other children with ASD who have died as a result of wandering and outlines five needs/action items identified by the community. The first is to collect data to understand the scope of the issue. The next action item is to develop and test programs to prevent wandering incidents. The third is to coordinate with the Department of Justice to expand the AMBER alert to include children with ASD who have wandered and the fourth is to develop a medical code for ASD-related wandering. The last action item is to meet with a representative from the Department of Education to develop guidelines about parental notification in the event of a wandering incident at school. The subcommittee was unable to come to a consensus on a draft to take to the committee but Ms. Singer said that they would present a draft at the January 2011 meeting. She reported that the subcommittee had also drafted four objectives for the Strategic Plan, two of which will be included in the 2011 Plan.
Ms. Singer asked for the committee's permission to meet with representatives from the Department of Justice (DoJ) and the Department of Education to discuss issues around the AMBER alert and parental notification after wandering incidents, respectively. Ms. Redwood presented her proposal for conducting a Request for Information to gather input from the community about their safety concerns. She presented two formats - one more general option with a single open-ended question such as "What safety concerns are the most urgent for people with ASD and their families" and a more tailored option with several specific questions such as "What are your top three safety concerns relating to keeping your child and your family safe?" and "What situations or settings in your community have been particularly challenging?" Dr. Judith Cooper noted that the broader option would allow input from educators and other stakeholders. Dr. Koroshetz recommended that people in the autism community take advantage of resources on epilepsy and mortality risks available through NINDS.
Ms. Blackwell noted that the RFI seemed focused on children with ASD to the exclusion of adults. She also suggested that the Subcommittee on Safety be combined with the Services Subcommittee and recommended that Ms. Lewis take her place as co-chair of the Services Subcommittee. Dr. Insel summarized the underlying tension between wanting to accomplish action quickly and needing to explore the issue further with concrete data. Ms. Singer and Ms. Redwood reported that they were collaborating with the Interactive Autism Network (IAN), which includes approximately 35,000 families affected by ASD, to send out a survey on safety. The committee noted that the data would become available quickly and would be an important source of information. Dr. Dawson made note of a study in California that had analyzed mortality rates and causes of death for people with ASD (with and without epilepsy) and individuals with epilepsy alone. Dr. Dawson said that the study had just been accepted for publication and that she would give a presentation on the findings at the next meeting. Dr. Boyle noted that the results of the study were similar to the mortality study conducted in Sweden, which showed higher mortality rates for women and individuals with epilepsy. The committee discussed their reaction to the RFI proposal and Dr. Hann clarified that the earliest an RFI could be open for comment would be the end of February 2011 if the proposal was accepted at the January 2011 meeting. The Safety Subcommittee decided to discuss the matter further at their January meeting and Dr. Insel noted that the IAN document would also be helpful in generating the RFI questions. Ms. Singer asked for permission to contact a representative from DoJ and the Department of Education and Dr. Gail Houle recommended contact with Mr. Kevin Jennings of the Office of Safe and Drug-Free Schools and with Dr. Alexa Posny of the Office of Special Education and Rehabilitative Services. She also recommended contacting Mr. Bill East, of the National Association of State Directors of Special Education (NASDSE) to ask about related state guidelines.
Update: IACC Services Subcommittee
Ms. Blackwell described the Services Workshop held on November 8, 2010 and recommended for those who did not attend to review the materials and videocast of the event.22 23 She reviewed the speakers and their topic areas and noted that the subcommittee had met after the workshop to discuss potential recommendations to the Secretary. Ms. Blackwell said that Dr. Larke Huang had praised the meeting as being one of the best she had heard in years. She stated that she was before the full committee that day to ask them to consider sponsoring a second meeting in spring 2011 on issues that were not addressed during the first meeting. Mr. Grossman said he was happy to see how forward-thinking the speakers had been and that the Services Subcommittee would meet in January to continue to develop their recommendations. Ms. Resnik thanked the co-chairs for their hard work and asked about the process developing and prioritizing the recommendations that would go forward to the Secretary. She said that without some sort of litmus test it was going to be hard to identify top priorities from the multitude of potential recommendations. Ms. Singer recommended having increased focus on private sector activities at any future workshop. Mr. Ne'eman disagreed that the focus should be on the private sector because the majority of services and supports are publicly funded. Ms. Resnik clarified that the private sector can often inform future public policy by testing how easily models can be replicated and scaled up to meet increased demand. Ms. Redwood suggested exploring topics other than services for a workshop in order to inform the Strategic Plan update. Dr. Insel said that the committee would return to questions about workshop topics as well as the leadership of the Services Subcommittee at the January meeting.
Discussion of Public Comment
In regard to Ms. Adbull's comments, Ms. Blackwell acknowledged that some states had reduced provider rates but explained that states have to assure CMS that the rates they pay to providers are sufficient to serve the number of people participating in the program. She said that the Early Periodic Screening and Diagnostic Treatment Program is used to ensure that children receive medically necessary Medicaid services. If a child is denied a service, his or her parent or guardian can appeal the service denial. She said she had never heard that some states do not classify autism as a mental disorder under Medicaid. Mr. Ne'eman said that many self-advocates had noted a shortage of providers who accept Medicaid. He stated that this lack of sufficient providers was not limited to the autism community but affected all communities with a substantial number of low-income members. Dr. Insel said that much of the discussion around Questions 5 and 6 related to Ms. Prince's comments about preparing for transitional needs. Ms. Prince came to the table and offered any help her organization could provide.
Discussion of Studies on Ethical, Legal, and Social Implications (ELSI) and Adjournment
In the time remaining, the committee turned to Dr. Guttmacher for guidance on the issue of studying the ethical, legal, and social implications of genetic testing for ASD. Dr. Insel asked whether he felt these should be independent studies or part of existing research studies and whether this was, in fact, the time to hold a meeting on these issues. Dr. Guttmacher said that ethics, legal and social studies had been done related to other conditions that might be informative for autism. He said that ethics studies of Down syndrome, while different from autism because it results from a known genetic abnormality, might give some insight into ethical issues around genetic testing. He discussed prenatal testing in cases of cystic fibrosis and dwarfism and noted that while they differed from autism in meaningful ways, they might provide some useful context. Dr. Insel summarized that it may be premature to call for studies of ethical, legal, and social implications for autism and that they might benefit more from consulting experts in the field about next steps. Mr. Ne'eman suggested developing a short-term objective to convene a meeting for further input and a long-term objective to conduct the studies informed by the meeting. Dr. Boyle recommended an objective to convene a workshop in 2011 that examines the ethical, legal, and social implications of autism, using information from other conditions as a resource, with the goal of defining a long-term research objective on the subject. Mr. Ne'eman asked Dr. Guttmacher whether the extent of current knowledge would be sufficient to develop a long-term objective. Dr. Guttmacher responded that investments would be made most wisely if they were guided by a better understanding of relevant work and areas of need. The committee voted to include the language similar to that proposed by Dr. Boyle. The committee decided to defer discussion of the Introduction to the January 2011 meeting and the meeting was then adjourned.
These minutes of the IACC Full Committee were approved by the Committee on January 18, 2011.
I hereby certify that this meeting summary is accurate and complete.
Thomas Insel, M.D.
Chair, Interagency Autism Coordinating Committee
2 Ecker C, Marquand A, Mourão-Miranda J, Johnston P, Daly EM, Brammer MJ, Maltezos S, Murphy CM, Robertson D, Williams SC, Murphy DG.Describing the brain in autism in five dimensions--magnetic resonance imaging-assisted diagnosis of autism spectrum disorder using a multiparameter classification approach. J Neurosci. 2010 Aug 11;30(32):10612-23.
3 Zikopoulos B, Barbas H. Changes in prefrontal axons may disrupt the network in autism. J Neurosci. 2010 Nov 3;30(44):14595-609.
4 Kaiser MD, Hudac CM, Shultz S, Lee SM, Cheung C, Berken AM, Deen B, Pitskel NB, Sugrue DR, Voos AC, Saulnier CA, Ventola P, Wolf JM, Klin A, Vander Wyk BC, Pelphrey KA. Neural signatures of autism. Proc Natl Acad Sci U S A. 2010 Dec 7;107(49):21223-8. Epub 2010 Nov 15.
5 Scott-Van Zeeland AA, Abrahams BS, Alvarez-Retuerto AI, Sonnenblick LI, Rudie JD, Ghahremani D, Mumford JA, Poldrack RA, Dapretto M, Geschwind DH, Bookheimer SY. Altered functional connectivity in frontal lobe circuits is associated with variation in the autism risk gene CNTNAP2. Sci Transl Med. 2010 Nov 3;2(56):56ra80.
7 Ashwood P, Krakowiak P, Hertz-Picciotto I, Hansen R, Pessah IN, Van de Water J. Associations of impaired behaviors with elevated plasma chemokines in autism spectrum disorders. J Neuroimmunol. 2010 Nov 20. [Epub ahead of print]
8 Keil A, Daniels JL, Forssen U, Hultman C, Cnattingius S, Söderberg KC, Feychting M, Sparen P. Parental autoimmune diseases associated with autism spectrum disorders in offspring. Epidemiology. 2010 Nov;21(6):805-8.
9 Marchetto MC, Carromeu C, Acab A, Yu D, Yeo GW, Mu Y, Chen G, Gage FH, Muotri AR. A model for neural development and treatment of Rett syndrome using human induced pluripotent stem cells. Cell. 2010 Nov 12;143(4):527-39.
10 Ecker C, Marquand A, Mourão-Miranda J, Johnston P, Daly EM, Brammer MJ, Maltezos S, Murphy CM, Robertson D, Williams SC, Murphy DG. Describing the brain in autism in five dimensions--magnetic resonance imaging-assisted diagnosis of autism spectrum disorder using a multiparameter classification approach. J Neurosci. 2010 Aug 11;30(32):10612-23.
11 Scott-Van Zeeland AA, Abrahams BS, Alvarez-Retuerto AI, Sonnenblick LI, Rudie JD, Ghahremani D, Mumford JA, Poldrack RA, Dapretto M, Geschwind DH, Bookheimer SY. Altered functional connectivity in frontal lobe circuits is associated with variation in the autism risk gene CNTNAP2. Sci Transl Med. 2010 Nov 3;2(56):56ra80.
12 Presentation to the IACC on the meeting convened by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. Kau A, James, R. Disparities in the Identification of Children with Autism Spectrum Disorders: A Meeting Report. (PDF – 145 KB) 2010 Oct 22; Bethesda, Maryland.
13 Institute of Educational Sciences, U.S. Department of Education. Early Childhood Education Intervention for Children with Disabilities: Lovaas Model of Applied Behavior Analysis, August 2010.
14 Government Accountability Office. Oral health: efforts under way to improve children’s access to dental services, but sustained attention needed to address ongoing concerns. (PDF – 4.55 MB) 2010 Nov.
15 Smith V, Gifford K, Ellis E. Hoping for economic recovery, preparing for health reform: a look at Medicaid spending, coverage and policy trends results from a 50-state Medicaid budget survey for state fiscal years 2010 and 2011. Kaiser Commission on Medicaid and the Uninsured and Health Management Associates. (PDF – 3.86 MB) 2010 Sept.
16 Gillberg C, Billstedt E, Sundah V, Gillberg IC. Mortality in autism: a prospective longitudinal community-based study. Journal of Autism and Developmental Disorders. 2010 Mar;40(3): 352-7.
17 Young J, Corea C, Kimani J, Mandell D. Autism Spectrum Disorders (ASDs) Services: Final Report on Environmental Scan. Prepared for the Centers for Medicare & Medicaid Services. (PDF – 2.44 MB) 2010 March 9.
18 Taylor JL, Seltzer MM. Employment and Post-Secondary Educational Activities for Young Adults with Autism Spectrum Disorders During the Transition to Adulthood. J Autism Dev Disord. 2010 Jul 17. [Epub ahead of print]
19 Saemundsen E, Juliusson H, Hjaltested S, Gunnarsdottir T, Halldorsdottir T, Hreidarsson S, Magnusson P. Prevalance of autism in an urban population of adults with severe intellectual disabilities – a preliminary study. Journal of Intellectual Disability Research 2010 Aug;54(8):727-35.
20 Chowdhury, M, Benson B, Hillier A. Changes in restricted repetitive behaviors with age: a study of high-functioning adults with autism spectrum disorders. Research in Autism Spectrum Disorders. April-June 2010;4(2):210-216.
21 Cohen IL, Tsiouris JA, Flory MJ, Kim SY, Freedland R, Heaney G, Pettinger J, Ted-Brown W. A large-scale study of the psychometric characteristics of IBR modified overt aggression scale: findings and evidence for increased self-destructive behaviors in adult females with autism spectrum disorder. Journal of Autism and Developmental Disorders. 2010 May;40 (5):599-609.